Our Story

The doctor grew very quiet during the ultrasound, which seemed to take forever.  Eventually, he told us that he was seeing an increased amount of amniotic fluid, some swelling on the baby, and something unusual in the baby’s chest cavity.  He wanted to send us to Indianapolis for more answers.  The drive to Indy was scary and full of unknowns, but we had no idea that I wouldn’t be home again for over a month and all that would transpire in that time.

It took a couple of days and several doctors, examinations and ultrasounds before we finally discovered that the baby had a very rare condition called a CCAM.  This is a large mass growing in the baby’s chest that displaces organs and prevents the lungs from developing properly (for more information click here).  In Grace, the growth had caused her esophagus to be out of alignment and was preventing her from processing amniotic fluid, which is why it was accumulating in me.  One of the doctors in Indianapolis, who had identified the condition despite the fact that Indianapolis had never seen one, decided that I needed to see a doctor in Cincinnati who specializes in the condition and the fetal surgery that is often the best chance for the baby’s survival.  So… it was off to Cincinnati for a consultation.

We went to the Fetal Care Center, which is a special practice incorporating the best doctors from three hospitals including Cincinnati Children’s Hospital.  After a long day of tests (MRI, fetal EKG, etc), Dr. Timothy Crombleholme advised us to wait the condition out a while. He said that often, the CCAM stops growing and the baby continues to grow.  This eventually improves the size ratio and allows the organs to start developing and functioning as normal.  So I returned to Indianapolis for some time, being monitored closely and having frequent reductions in amniotic fluid (a liter at a time).  Hospitalization was necessary because it is possible for life-threatening symptoms to develop in the mother in this situation. My hospital room had a dry erase board on which I wrote my favorite Bible verse – one that has grown to mean even more to me.  Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.”  This verse, my husband’s strength, and the prayers and visits of so many friends and family got me through these many days in the hospital without sinking into the depths of fear and depression.  I am grateful that I was protected from the mental toll this could have had on me.

Eventually, I returned to the Fetal Care Center and discovered that the CCAM was continuing to grow.  Dr. Crombleholme decided that the only chance for Grace was to undergo an intrauterine fetal surgery in which he would remove the mass and then allow the last month of pregnancy to continue so that her lungs could continue to develop.  He gave us a 80% probability of her survival with the surgery, but very little chance without it.  Although it was certainly a risky operation for me as well, there was no question in our minds what we would do.

I will never forget Dr. Crombleholme looking me in the eyes as I went into anesthesia and reminding me that when I work up, there was a chance I would not be pregnant.  In coming back to consciousness I only vaguely remember him telling me that Grace’s edema was greater than they thought, and they were unable to administer the IV that would stabilize her heart.  During the surgery she went into cardiac arrest.  While I was still under, my husband had found out for the first time that he had another baby girl, and that we had lost her.

My strongest memory is holding Grace in my arms, realizing that I would never know her personality or see her grow into a young lady.  She had red hair just like me and our firstborn daughter, Anna.  She looked small, but perfect.  So hard to believe there was anything wrong. There have been so many times that I have wished I could hold her in my arms just one more time.

There are many who have said that they don’t understand why God didn’t answer our prayers for healing, or why He said “No” to them, but Ben and I disagree with this perspective.  We believe that He did answer them with a “yes”, it just wasn’t in the form we were hoping for.  God provided Grace with the ultimate healing.  He brought her straight to heaven.   We see such a small picture.  I believe that He spared her from a life of illness, disability, hospitals and surgeries.  He just lovingly brought her home to be with Him.

Even in heaven, I’m not sure we’ll know all of the reasons why this tragedy happened to us.  But I know this and believe it with all my heart… God is loving.  Always.  He holds us through the pain. never wastes the hurt, and always brings beauty from the ashes (Isaiah 61).